Great stuff on here. I have it better than many of you, in that I've had no surgery and I still have all of my tongue. I'm ~2.5 months from 7 weeks of radiation (33 sessions) with three rounds of chemo (Cisplatin). Did not require a feeding tube or port. Lost ~20 lbs during treatment.

My salivary function is very low (dry mouth). My taste has returned to a degree.

My tongue is heavily coated and I'm debating with myself if this might be an infection, or just a more-heavily coated tongue due to dry mouth.

Anything acidic triggers sore "water blisters" in my mouth and at the top of my throat, these may be "secondary salivary glands" that are plugged by damaged mucosa? Acidic things that I can't eat include tomatoes, salad dressing, red grapes, wine. Sometimes it just seems that eating too much of anything "solid" triggers these as well. It's difficult to predict what will set off my blisters and/or sore throat.

I've had good luck with bluberry pancackes and french toast (with lots of butter and real maple syrup), cheese and wilted spinach omlets with ketchup (ketchup is sweet enough to not sting?), rare filet mignon (it's very tender), rich salmon (mind the bones!), cucumber/cooked beets/blueberry salad (watch the dressing), melon (water, cantelope), steamed asperagus (again, lots of butter), baked sweet potatoes (with lots of butter), cottage cheese (good with honey, but there was a time when I coldn't eat this for some reason.....dry mouth? became a disgusting paste in my mouth), sweet yogurt.

Things like other cuts of beef, or beef that's not rare, and poultry tend to take on a "fibrous wad" character in my dry mouth and are very difficult to swallow, and drag on the way down with painful result. Also, anything that could be described as "massive and sticky" is a no-go: mashed white potatoes (you'd think they'd go down great), grilled cheese sandwich (even if chased with milk), ground beef.

Hope some of these are useful to some of you.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.